Ectopic advice

[Nosejug]

Hello, I’ve had three repeat bloods. I was only early in the pregnancy and had spotting and some pain so EPU took bloods. I had great numbers for how early I was, but on second bloods they had plateaued (risen by like 10) and on third rose by 36%. They’re at 660, and I’m getting a scan next to try locate it but it’s very likely ectopic. I would love this to be a normal miscarriage as we’ve been ttc 3.5 years, have had one mmc and two failed rounds of ivf. Both pregnancies spontaneous. I can’t take the toxic drug that will end it becuase it will hugely affect my few remaining eggs. I’d rather lose a tube. I hate this. I’m wondering, if they can locate it will they do surgery? Or just keep testing bloods in the hope it will stop growing? I’m wondering if anyone has anything to say that will make me feel less awful and hopeless. If you got surgery, how long was recovery? (And I’m sorry you were in the same awful boat).

I'm so sorry you're going through this. Depending on the scan and repeat bloods you may be offered expectant management. I went down this route with one of my ectopics and was definitely the best option for me as like you I was very keen to avoid methotrexate. For this option they will usually need to see hcg levels to be quite low and beginning to decrease naturally. I have also had the surgery for a previous ectopic and personally it took me a long time to fully recover, probably about 6 months although I know most people recover sooner than that. If it does turn out to be an ectopic research and explore all of your options available. https://ectopic.org.uk/treating-an-ectopic-pregnancy is a really good resource. Be kind to yourself and don't be rushed into any decisions 💐

Thanks so much for your kind and sensitive response @Tryingmomma32 . I’m definitely in the angry through-everything-out-the-window stage of processing this. Will try to sleep on any decisions. 6 months, wow, I thought maybe it would be like egg retrieval. I guess not. Sorry you’ve been through this more than once ♥️

I had no signs of ectopic until it ruptured at 7 weeks so had surgery to remove the tube. I was able to get up and walk straight away, but to feel completely back to normal I’d say it was 2 weeks at the most xx

Oh @BGxxx im so sorry it ruptured, but two weeks recovery is amazing, and so hopeful for me to hear right now. I wonder if I opt for surgery before rupture that gives me a better chance of also recovering quickly. Everybody is different of course and maybe I’d be unlucky, but you’ve given me something to cling to. Thanks.

@Nosejug how are you getting on? Have they confirmed it's ectopic and talked you through your options? Thinking of you today 💕

Aw thankyou for thinking of me @Tryingmomma32 . I have a scan tomorrow morning where they hopefully will be able to see something wherever it is. And they said I’ll speak to a doctor who will talk me through the options. I’m still lightly spotting in the morning and currently have mild abdominal cramping. I wish they hadn’t risen yesterday and I could just expect a miscarriage. I’d love to know what has happened with this whole pregnancy. I had an extremely early positive and very high progesterone. I’m trying to put those pieces together.

I was told that methotrexate absolutely does not affect egg quality at all? My AMH level didn’t go down at all either? Now I’m worried!!

Hi. So sorry this is happening to you. We have such similar stories, I’ve had 3 failed ivf cycles, a miscarriage and now experiencing a molar.

My molar was a suspected ectopic (not saying you have this as it’s so rare!!!) but I remember the anxiety of hcg and scans etc. my hcg plateaued at 24,000 but did some really weird rises to start with, second draw went up by just 30miu and then third draw by about 40% but then it started rising normally (doubling). We did discuss methotrexate and I was told it doesn’t impact egg quality? I’m also on a national follow up for my molar and might need a 7 day course of methotrexate and again they haven’t mentioned egg quality. So many women have it and are fine.

wishing you lots and lots of luck through this - it’s truly shitty xx

Hopefully the expectant management is the way forward for you, but just thought I would share that I was back at work 2 weeks and 2 days after tube removal surgery, and able to move around easily just at home probably after a week and a half. Wishing you all the best - it’s an awful situation to be in

I’m so sorry you’re having to go through this. I’ve had two ectopics. The first was treated with methotrexate and the second with surgery. Methotrexate would definitely be the least invasive option to go for. This study would suggest that there’s no affect on your remaining eggs https://www.fertstert.org/article/S0015-0282(13)02952-X/fulltext

In terms of recovery time from surgery it will vary greatly depending upon whether or not they can do keyhole or have to do a laparotomy. I hope you get a definitive answer and action plan tomorrow. Being in limbo is so hard to deal with.

I think amh is supposed to be unaffected, and long term egg quality too. It’s just the first three months after the drug that they advise you not to ttc. We were jusssst about to do another round (actually 3 back to back egg collections) so I was just panicking about the delay. With my very low amh (3.8) am likely to run out rather soon. Sorry if I made you panic, they definitely didn’t say all eggs would be affected. Just through the lens of my own situation if doesn’t feel right. Sorry you have been through this, it’s pretty tough. I hope you have a healthy pregnancy soon.

I have opted for surgery to remove the tube. Just waiting on it now. The risk of my tube being blocked after methotrexate was too worrying as I didn’t want it to then be at risk of giving me another ectopic. It’s so hard to know if I’ve chosen the right thing. Certainly I know I had quite black looking blood this morning which was alarming. I’ve had a massive haemorrhage of the cervix 1.5 years ago and abnormal bleeding is a bit triggering for me. (This was 2 weeks after a lletz treatment). I hope I’ve chosen the right thing, time will tell. Thankyou so much for all the support and advice you’ve all given me. Maybe if I wasn’t terrified of rupture and haemorrhage I’d have further considered medical management.

@FunnyRaven im so sorry you’re going through this right now. Molar is so rare. It’s so crap to think how unlucky we can be. Why not just a normal pregnancy instead like everyone else?! How are you being treated? I hope it’s resolved quickly for you x

@Nosejug it truly is crap. I thought my MMC was unlucky but nothing prepared me for this. I always wonder what it would be like to have a normal pregnancy - I know nothing but loss and medical trauma. So sorry you’re experiencing such heartbreak too. I’m having bi-weekly blood tests to make sure my hcg drops to below 5. I had my D&C 4 weeks ago and my hcg is 65 🤗 getting there if it doesn’t drop I’ll need chemo 🥹😟. Thinking of you - you’ll find your strength again xx

I found my MMC more distressing than my two ectopics - however I do appreciate rupture and emergency surgery is another level to my experience.

With mine - one resolved on its own and the other I had methotrexate. My numbers were always very low.
i know it’s scary but it doesn’t always end in rupture or loosing a tube.
I did IVF 18m after methotrexate and got 19 eggs, some excellent blast quality. I was also pregnant 7 months after the methotrexate.
you can boost the quality of your eggs during the 3m abstention from unprotected sex with supplements then move to TTC again after this.

Hah thanks @Xwx1010 but I’ve done ivf twice on maximum protocol and got a total of 4 eggs. It’s great that you got 19 eggs, it’s just never going to happen to me, and so my worries are about the quality of the one egg that I might get if I’m lucky. I’ve had a mmc too at 10 weeks and the ectopic for me has been much harder medically. Different emotionally though.

Well, I was waiting for surgery in my paper pants and with my hand tubed and someone that was way more critical got put before me, 6 hours later (very hungry!) they said I could go home and come back first thing for surgery as I was stable. The next day they said my hcg had dropped 30% so I could wait two days, it again dropped 30% and another two days, and today 10%. I’m in expectant management now, mild pain and bleeding but glad to still have my tube. My hands and arms are so bruised, they mentioned getting bloods from my feet…!

@FunnyRaven i know what you mean, I look at heavily pregnant women in wonder (and yep, substantial jealousy) and just think how on earth does it happen?? I have a friend who got pregnant at 40, and she’s about ready to go. We were pregnant roughly at the same time (my 1st mmc) and it’s like watching an alternate reality. Amazing that your hcg has come so low ♥️ I hope it’s still coming down and that you won’t need the chemo drugs. I also hope by the end of the year we’ll both be clasping lovely round bellies.

i did caveat by saying I appreciate this is my experience and not everyone will feel the same. I think ectopics are naturally terrifying but in my experience, after having 2 they are manageable I suppose I was trying to provide some reassurance.
also understand everyone’s experiences are different going into ivf - again just trying to give some hope and reassurance that egg quality can be improved upon for most and successful and healthy pregnancies can happen after methotroxicate.

good luck with whatever treatment plan you end up on.

Glad to hear your update!! It sounds really positive things are sorting out on their own. I hope you’re back to 0 soon xx

@Nosejug I also got pushed back twice waiting for my surgery, even though I was internally bleeding lol. When I saw the surgeon after he said sorry I didn’t realise it was quite so bad 🤣 I think I waited 15 hours in the end

@Nosejug oh wow what a crazy ride, I’m so glad your numbers have dropped naturally - come on body, do your thing 🤗 we have such similar stories, I was about to have surgery for my molar with a surgeon I really didn’t want to use (long story) and then it got cancelled due to an emergency - I stayed over night and then got sent home. I ended up having 2 failed D&C’s under general, plus one attempted D&C whilst awake, in the end they gave me tablets and I had a horrendous miscarriage at home 🫨 the emotional toll and medical trauma is horrendous. I feel you on the blood from the feet too, they threatened that with me when my veins in both hands and both arms gave up 🤣 I said ABSOLUTELY NOT, you can wait for another day!!

Ive shockingly just had my first period, so I pray this is it and I can get back to normal. Praying for our round bumps 🥰 we deserve this so much. Keep us posted on your hcg xxx

@FunnyRaven oh my goodness! that period must be so so welcome right now. there has definitely been a time during the last few years of miscarriage and ivf meds that I got one of my normally bleeding, as expected, on time and without sadness or fear periods, and it was weirdly nostalgic, like one of those periods long long before I ever thought about ttc. It can be a thing to celebrate it turns out! If i do get my baby in the end then hopefully i'll have a year or so to 'enjoy' normal monthly bleeding before early menopause starts :) Enjoy this moment of normalcy before getting back on the ttc train xx

@BGxxx oh my goodness, waiting and waiting without food for 15 hours must have been very difficult. I mean, those moments of 'I told you so' are quite satisfying but in this situation i'm sure you could have done without! I've discovered from all my days of not eating till I'm told I can go home is that sandwiches are my fantasy food when I'm very very hungry.

@FunnyRaven i meant to also say that I too have a surgeon I dreaded being told was performing the surgery! It's probably not his fault but he 'caused' my haemorrhage before and my brain is like 'absolutely not!'